Pancakes, Plasma & Pomposity

I was just thinking, before I go on…. please understand, never is the litany of my gripes an attempt to burden anyone with my grief – instead, it’s an attempt to UN-burden myself. Putting stuff out there, writing it down is therapeutic and helps to un-clutter my mind. I know I’ve mentioned this before, but no one should read these posts and thinks ‘poor chris’…. they should truly, deeply, openly and un-ashamedly weep for me, where you are – on the spot, fully as an old Italian women at a funereal, black shawls, rocking back and forth wailing, great, huge, whole body-wracking sobs…. if our relationship means anything to any of you….cry, cry for me as you’ve never cried before. You should continue until you partially de-hydrate yourself and your eyes puff nearly closed. Only then will you begin to truly honor and properly pay tribute to my epic struggles. Besides, the more emphatic of you will most certainly be in the movie, that will inevitably be made about my life. Hey, they made one with john Travolta in a bubble, so I have a good shot.

You ridiculous, preening, vain-glorious, sick, self-indulgent, pompous tool…. who’s going to make a movie about you? I’m not saying they definitely will, I’m saying the possibility exists – and when that possibility becomes fact, the more animated of you will be included. Listen, once my Cult finally takes shape and blossoms into greatness, it’s a lock — in the movie, I hope I’m played by Linda Hunt.

On to the gripes…

I have developed some new symptoms/annoyances – the first is the most random — some weird dryness, cracking and bleeding of the skin on either side of my nose, right in the crack where the skin of the nose meets the cheek. Never had anything like it before. No history of Eczema or skin issues of any kind so that’s kind of odd, hurts and itches. Where is all this stuff coming from, one after another after another… it’s just too too strange.

A few days ago I started having some throat issues part of the “Bulbar” weakness my Neuro told me to expect, it constantly feels like there is something stuck in my throat, you have no idea how annoying this is – it is driving me bloody crazy. I’m having no problem swallowing, breathing or eating – in fact, when I eat it goes away only to return shortly after I stop. It is still concerning because there are many situations whereby my weakness and fatigue means food and liquid goes down the wrong pipe and aspirating food is a big old ‘not good’…. everything I’ve read, from a medical standpoint, points to the fact that one doesn’t wish to have pancakes floating around in their lungs….

Speaking of lungs, I’m still having the mysterious burning lungs sensation, but not as often as I was… perhaps the pancakes have almost burned through all the viable tissue…

Lastly, I have another brand new specialist appointment tomorrow, I didn’t even know I had been referred to another Doctor, no one told me, it’s with a Dr Zypchen, a Hematologist (Blood doctor) – apparently we’re going to discuss a possible “Apheresis” procedure for me… from what I’ve been able to figure out, it’s another type of transfusion, instead of Immunoglobin replacement as with the IVIG this one takes out, cleans and replaces all my plasma… not entirely sure why I’m being sent here but I guess it will be cleared up at the appointment, as always I’ll fill you in tomorrow…